Hi, I occasionally get difficulty breathing, my b... - LUPUS UK

LUPUS UK

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Hi, I occasionally get difficulty breathing, my breath is short and it hurts to breath or take a deep breath.

AngelaW profile image
8 Replies

I hardly slept last night and couldnt go to work today as the pain in my chest is so bad. The triage nurse at my surgery said take a pain killer (I live on them) as she couldn't give me a doctors appt!

Does anyone else suffer from short breath or pain on breathing? (It's not heart related).

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AngelaW profile image
AngelaW
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8 Replies
NickyB profile image
NickyB

Hi I have for a while now. I have been told by 2 Rheumys that I have costochondritis. I suffered for 3 yrs now. Although it has eased up quite a bit since I started meds.

Hi Angela,

I've had chest pain so bad that on every breath I thought it was a heart attack. Lying down made it worse. On both occasions it turned out to be pleurisy. I hope you can see your GP about it soon.

I don't think anyone with complex medical problems like ours should be expected to accept telephone diagnosis from someone who is not familiar with our medical history or underqualified to deal with the complexity. If it were me, I'd push to see a doctor.

Lupie_Sal profile image
Lupie_Sal

I too have had this, asked my consultant last week and had a chest xray. They said as its not all the time come back in 3 months although she did seem concerned about the xray !!! Wish i knew what it was as it does feel like you may be having a heart attack !!!! I also have heart flutterings aswell and they didn't seem too bothered about that either :o(

bettie profile image
bettie

I to have bad chest pains,2 years ago it was unbearable, i could not lay down, all i could do was sit and take very small breaths, it got to the point i had hardly any oxygen going around my blood stream. Chest was clear, xrays showed nothing on my chest even in hospital they did not know what the problem was, and then one of the docs took all my symptom, skin rashes, high temp, mouth ulcers, lose of weight, severe anaemia and the chest pains, bingo sle given loads of steriods and 2 week stay in hospital, i would not like to repeat that time again. I still have chest problems including copd, i still take steroids but every now and again i have to have i larger dose. Insist on seeing a doc.

Good luck

Monica82 profile image
Monica82

Hi i have been suffering with the symptoms you are referring to since 2003, it’s a sharp pain which than turns to a constant burning pain in my chest, it hurts to inhale, cough, and sneeze or to turn around in bed. I have been diagnoses with Pleural Disease (Inflammation of the lung lining). Over the years test results have showed that the size of lungs have decreased which means my lung capacity is also smaller.

The test i had done were chest xrays, CT scans and lung fuction test.

The treatment for this unfortunately is steroids; I found that painkillers do not work. I have been on steroids with varying dosages since 2003 and have never come off the drug as it causes the lung pains to return.

Exercising helps, try to keep the lungs active and to reduce your body weight it’s helped me a lot this summer. I was unfortunately very ill at the beginning of this year I was advised to increase my steroid intake to 30mg instead of the daily 5mg I had been on. The increases in medication lead me to gain weight and even more breathing problems. I found that by being active and losing the 3 stones in 4 months it has considerable reduces my symptoms.

I have been put on a new drung called Mycophenolate Mofetil which has helped alot, so i am now bale to reduce the steriods and to keep it at low dosage.

I hope this help

AngelaW profile image
AngelaW in reply toMonica82

Many thanks to every one for their replies, it's good to know we don't suffer alone!! My pain got so bad, and with little chance of getting in to see my GP, I rang NHS Direct who sent me an ambulance. I spent a good few hours in hospital getting some serious pain relief and having lots of tests all of which proved inconclusive of everything other than tender chest walls and possible muscular pain. I sometimes think the medical profession think it's all in the head! I will definately bring this up with my rheumy and try to get him to delve a little deeper.

Paula1968 profile image
Paula1968

I had the same response of 'nothing wrong' when I had breathing difficulty. My rheumy docutor was brilliant and insisted on a camera down to look after xrays and ECG's and found that I had a hiatus hernia probably caused by years of medication. Good luck, with finding out what it is. Sometimes knowing is half the batle.

WestEndGirl profile image
WestEndGirl

I have trouble breathing, my lungs were scarred when I was 4 years ols, though it took another 30 years after that to find Lupus. If the light is very bright I get a lot of chest pains, this week I have a chest infection and it feels like I'm drowning to try and lay down - it's very scary!!! I'm taking Prednisolone 20ish mg along with Hydroxychloroquie and Azathiaprine and my GP / Rheumey wont discuss me stopping taking them until the bright sun is gone as it seems to be making it worse, though having said that am dreading the winter now. It's definately worth getting the hopsital to look into it for you, my GP sent me for tests before the Rheumey as he'd want them anyway.....good luck.

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